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Identification and development of a rehabilitation intervention to ensure adherence to life-long follow-up for patients with Myotonic dystrophy type 1.

Project: Research

  • Danish Rehabilitation Centre for Neuromuscular Diseases
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The aim of the PhD-project is to investigate different experiences of and perspectives on living with DM1 and challenges related to adhering to life-long follow-ups, understanding, and navigating within health systems. A scoping review will identify the existing literature related to living with adult onset DM1. Three qualitative studies will investigate experiences and perspectives related to adherence to life-long follow-ups, understanding and navigation within health systems from the perspectives of patients, their caregivers, and healthcare professionals. The project will generate new knowledge about experiences of healthcare follow-up of patients with DM1 and give an understanding of aspects of a lifelong follow-up within healthcare. Examining the different perspectives related to lifelong follow-ups is essential knowledge to optimize the follow-up and develop a rehabilitation intervention that contributes to active participation and ensure patients the follow-up they are entitled and need.
Effective start/end date01/09/202231/08/2025

    Research areas

  • Rehabilitering, neuromuscular diseases

ID: 294098524